Quality of life of parents of children with Autism Spectrum Disorder: An integrative literature review

Abstract

Purpose This paper presents an integrated literature review of the quality of life (QOL) in parents of individuals with Autism Spectrum Disorder (ASD). The rate of ASD is increasing. Parents of children with ASD have higher levels of stress and burden, which may lead to lower QOL. Design and Methods A comprehensive, electronic search was performed to retrieve 15 relevant articles, including 5565 participants. An integrative review was performed to appraise and synthesize findings. Results QOL was found to be lower in parents of children with ASD in physical, psychological, and social health and in spirituality, as compared with adults who were not parents of children with ASD. The strongest risk factor for parental QOL was the severity of the diagnosis of ASD. Protective factors for parental QOL were parent education level and levels of severity of ASD in the child. Practice Implications Nurses can support families impacted by ASD, particularly severe ASD, through tailored resources to support early diagnosis and intervention, through the support of policies affecting low‐income families, and through increased awareness of severe ASD and its' impact on the child and the family.

The importance of parenting self‐efficacy and social support for family quality of life in children newly diagnosed with autism spectrum disorder: A one‐year follow‐up study

“…Additionally, our results showed that higher parents' educational level was a positive predictor for both satisfaction and importance in FQoL. Parental education level was proved to be a protective factor for parental QoL (Turnage & Conner, 2022). However, a survey in South Africa indicated the limited influence of parental education on FQoL (Schlebusch et al, 2017).…”

“…FQoL refers to the extent to which family members' needs are met, allowing them to enjoy time together and pursue interests important to their well‐being (Hu et al, 2012). In recent surveys, parents of children with ASD reported a low‐to‐moderate level of overall FQoL (Balcells‐Balcells et al, 2019; Feng et al, 2022; Turnage & Conner, 2022), with greater satisfaction in the family interaction domain (Balcells‐Balcells et al, 2019), but the least satisfaction in the emotional well‐being domain (Feng et al, 2022; Schlebusch et al, 2017). FQoL is a continuum of family adaptation and may be influenced by the children's symptom severity and the parents' adjustment (Ni'matuzahroh et al, 2021; Turnage & Conner, 2022).…”

“…In recent surveys, parents of children with ASD reported a low‐to‐moderate level of overall FQoL (Balcells‐Balcells et al, 2019; Feng et al, 2022; Turnage & Conner, 2022), with greater satisfaction in the family interaction domain (Balcells‐Balcells et al, 2019), but the least satisfaction in the emotional well‐being domain (Feng et al, 2022; Schlebusch et al, 2017). FQoL is a continuum of family adaptation and may be influenced by the children's symptom severity and the parents' adjustment (Ni'matuzahroh et al, 2021; Turnage & Conner, 2022). However, parental psychology and symptom severity of children are not static.…”

“…The double ABC‐X model and previous studies indicated that FQoL is reflective of family adaptation among parents of children with ASD, and the diagnosis of ASD can be a stressful event with an impact on FQoL (Ismail et al, 2022; Pozo et al, 2014). The socio‐demographic and ASD‐related characteristics of children, parents, and families, parenting self‐efficacy, affiliate stigma, coping strategies, and social support, have been identified as potential influences on FQoL (Lei & Kantor, 2022; Schlebusch et al, 2017; Turnage & Conner, 2022). Based on the double ABC‐X model, we hypothesized that higher levels of parenting self‐efficacy and social support would be positively associated with FQoL satisfaction and importance at one‐year follow‐up.…”

Psychometric properties of the European Portuguese version of the Pediatric Quality of Life Inventory™ family impact module

“…Evidence shows that the family's response to the physical and psychological needs of the child/adolescent with chronic condition is a strong determinant of their adaptation and health, but it also shows that parenting in the context of chronic disease is a complex challenge often affecting the whole family (Sutthisompohn & Kusol, 2021). Families with children/adolescents with chronic conditions are confronted with significant changes in their functioning for the management of the condition, leading to increased stress and burden (Macedo et al, 2015) and decreased quality of life (Dey et al, 2019; Puka et al, 2018; Taminskiene et al, 2019; Turnage & Conner, 2022). In addition to the demands associated with the control of symptoms and the management of the therapeutic regimen, these families will also experience changes in their routines and social activities and face the need to develop skills in emotional management and communication with health professionals, among others (Toledano‐Toledano & Domínguez‐Guedea, 2019).…”